Does anyone else have MGUS?
I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
@silversun egad! What twists and turns you have endured on your path. I see what you mean when you say that knowing about your MGUS diagnosis is somewhat of a good thing.
Most MGUS patients are diagnosed when their physicians are in hot pursuit of something else.
I was talking myself down from panic when I was diagnosed about 3.5 years ago. This forum helped me as we have members who have had no progression of their MGUS for decades. It allowed me to calm my fears and remember that each day should be savored.
I also believe that I get the best medical care possible with my regular bloodwork and scans. It would be hard for something else to slip by my eagle-eye oncologist/hematologist and his radiologist sidekick completely. I fell like I am in good hands.
So when you go back in 4 1/2 months what is the strategy?
And thank you for the welcome.
I have had unexplained blood abnormalities including regular high WBC, and autoimmune disorders for decades without any real pattern or issues. One night in 2017 I was sent to the ER for what was found to be high blood counts in most of the CBC.
I was sent to oncology and was then diagnosed with an unspecified MPN. I had a BMB and some plasma cells on the cyto flow looked abnormal but it was labeled “undetermined significance.” The MPN dx was removed and I was continued to be followed. Iron infusions were on the regular and I was also diagnosed with a specific mitochondrial disorder. A
Spinal tap was performed and the results matched my blood. High wbc and neutrophils.
I moved to 6 month monitoring. She added in regular M protein testing. All was well until this last Monday. It was picked up in two tests and the trending changes qualified the upgraded diagnosis. My b12 tanked and that’s why I called to move up my apt. It’s only been 4.5 months since my numbers were stable.
I expected it. And the hematologist/oncologist I think did too.
@silversun welcome to the blood cancer and disorders group. I'm glad you found us.
I have so many questions. Were they monitoring you for something else and just recently discovered the MGUS or how did it happen that you were monitored for so long and they didn't know about this?
Are you being monitored by a hematologist/oncologist? What if you been told about MGUS? Has this been adequately explained and do you have questions that some of our members can answer?
@samanthamozel29 you are so right about educating myself about AI. Of course that is a universal truth and we should all try to at least have baseline understanding about most technology as there are so many "smart" appliances, etc. not to mention software applications.
I love technology if I understand it.
AI in the wrong hands could certainly do some harm.
Can I ask what what you had prior that you were monitored closely?
@amberl99 I know 😂. when I was diagnosed I was still working in a busy pediatric hospital. My physician colleagues all looked at me quizzically and asked what MGUS was.
I had to think about it at first! Of course in fairness, I doubt pediatricians will ever see MGUS.
At age 47 and after 7 years of being monitored closely I now have IgG Kappa Light Chain MGUS.
Knowing is comforting I suppose.
Seriously, I told a friend my diagnosis. She’s a PA. Her reply, “What’s that?”
@melonmug Welcome to Mayo Clinic Connect. What type of monitoring is your medical team doing for you?
Ginger